Health: Neuromuscular Services

Earl Howe Excerpts

Wednesday 30th March 2011 Grand Committee

[The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)]

My Lords, I am grateful to my noble friend Lady Thomas for raising extremely important issues and to other noble Lords who have contributed with such knowledge to the debate today. I join my noble friend in paying tribute to the Muscular Dystrophy Campaign, which has been such a powerful advocate for those affected by these lifelong and life-limiting conditions, and to the All-Party Parliamentary Group for Muscular Dystrophy, which has done so much to keep these important matters on the agenda. Although he is not in his place this afternoon, I cannot let the opportunity pass to remark that the noble Lord, Lord Walton of Detchant, is not only an active member of the all-party group but one of the founders of the Muscular Dystrophy Campaign in 1959. That really is a testament to both his commitment and his stamina.

The subject of the debate is, “What is the Government’s assessment of specialist neuromuscular services?”. For large parts of the country, I am afraid that the answer is clearly “not good enough”, and perhaps “poor” in some parts. We know that there are historic weaknesses, which noble Lords have drawn attention to during today’s debate. The urgency for change is all the greater because these failures have a massive impact on the lives of people with these conditions. There are around 5,500 emergency bed days a year for people with neuromuscular conditions, with all that that entails for them and their families.

The Health and Social Care Bill is clear that highly specialised services, as set out in the Specialised Services National Definitions Set, will in future be commissioned by the NHS Commissioning Board. This presents a real opportunity to streamline decision-making, funding, planning and commissioning of all specialised services, and to achieve greater consistency by doing it once through the Commissioning Board, rather than 10 times locally. I know that the all-party group received a progress report from staff in the specialised commissioning group on 9 March. I also understand that the all-party group and the Muscular Dystrophy Campaign liked what they heard about the excellent progress already made by the existing regional specialised commissioning groups and about how the national group’s work plan will prioritise neuromuscular disease in 2011-12.

The work plan will focus on the key issues for people with neuromuscular disease from service specifications to emergency admissions, and from access to services and workforce models to specialist equipment and non-invasive ventilation. Many of the subjects raised by noble Lords, such as hydrotherapy and physiotherapy and so on, will be embraced in that exercise. However, I think we need more. We need a high degree of integration across the care pathway to deliver more person-centred approaches to planning specialised services. People with conditions such as muscular dystrophy need more than just highly-specialised tertiary care; they need, and have every right to expect, the same community-based services that so many others enjoy. The ongoing care that is so important for supporting quality of life and keeping people out of hospital includes hydrotherapy and wheelchair services; speech and language therapy and respiratory support; and help with swallowing. These services need to be commissioned locally by those close to patients and their families. This is currently a job for primary care trusts, not the specialised commissioning teams. My noble friend Lady Thomas raised doubts, echoed by the noble Baronesses, Lady Wilkins and Lady Thornton, about the emphasis that GP consortia may place on these services. I absolutely accept that better co-ordination and better integration between commissioning teams and a more person-centred approach to planning across the whole care pathway rather than individual bits of it are all essential. Clearly, integrated planning between GP consortia and the NHS Commissioning Board will be vital, just as joint working between PCTs and specialised commissioning groups is today.

The best answer that I can give on this is to refer to the strength and accountability mechanisms that we plan to put in place. They include the role of health and well-being boards at local authority level; the joint strategic needs assessment and joint health and well-being strategies, which will inform and guide local commissioning decisions; the overarching commissioning outcomes framework, by which consortia will be held to account; the place of the patient experience within that framework; the transparency of consortia performance; and the role of HealthWatch, which will act as the local voice of patients and the public and which will be in prime position to feed in grassroots opinion and experience to local planning, not least through its membership of the health and well-being boards. Once again, the points raised by the noble Baroness, Lady Brinton, on access to physiotherapy services and the noble Lord, Lord Luce, on hydrotherapy pools are things which, I have no doubt, will come into the compass of the health and well-being boards.

A consistent message which I have heard and which my noble friend reiterated today is that clear guidelines from NICE to cover muscular dystrophy, home ventilation and respiratory support would improve matters immeasurably. I hope that noble Lords will understand that it is not for me to direct NICE—its strength lies in its independence from government and I am not going to compromise that—but the new system will see quality standards commissioned from NICE by the NHS Commissioning Board. It will want to have quality standards for those topics that will help it to meet its outcome goals. Because of the focus on outcomes, a new approach for topic selection is being developed, overseen by the National Quality Board, which will allow stakeholders to comment and suggest topics. NICE welcomes that engagement from voluntary and patient groups, not only in the strategic sense but also on matters of detail.

I have already paid tribute to the Muscular Dystrophy Campaign for its achievements and to the all-party group. I am afraid that I must break some bad news: their work is not yet done. The NHS is changing—there is a great deal of work to be done to make it more responsive to patients and their families, and it cannot do this alone. GP consortia will need advice and guidance as they take the reins; NICE is already talking with the neurological leadership group on how it can develop stronger clinical advice; and the National Quality Board is working on a broad library of quality standards for NHS care. These are opportunities for the Muscular Dystrophy Campaign and others to feed in their accumulated knowledge and expertise, either directly or through the Neurological Leadership Alliance.

My noble friend Lady Jolly and the noble Baroness, Lady Thornton, asked about research. The Medical Research Council is, of course, independent of government. We have ensured that its budget for the period of the comprehensive spending review remains intact; its resource expenditure can be maintained in real terms. However, it remains the case that the selection of projects for MRC research funding is determined through peer review.

The noble Baroness, Lady Wilkins, asked about the sub-national structures of the NHS Commissioning Board and how the capacity and capability of services will be sustained during the transition. I fear that much of this falls into the category of work in progress. It is definitely not only on the radar of the department but is the subject of active work as I speak. A priority during the transition period will be to ensure that key capacity and capability are sustained through to April 2013 in order to support delivery. As the noble Baroness may know, the Government are proposing a managed consolidation of PCT capacity in order to create transition clusters. These will be administrative mergers similar to those that have already taken place in London and the north-east.

My noble friend Lady Thomas asked whether NICE should conduct a detailed review of its guidance, particularly as it relates to Duchenne muscular dystrophy. I spoke to the noble Lord, Lord Walton, about this the other day and encouraged him to feed in this view to NICE directly. I well understand why the request has been made.

My noble friend Lady Thomas also asked about quality standards. For the NHS, the new system will see quality standards commissioned from NICE by the NHS Commissioning Board. It will want to have quality standards for those topics that will help it to meet its national outcome goals. The remarks I have made about the process of feeding in to NICE apply equally there as well.

The noble Lord, Lord Luce, asked about training for GPs to deal with specialised services. As he knows, the Department of Health does not specify the content of training curricula; that is determined by regulatory requirements and the needs of the service. Comprehensive information to support clinical decision-making is included on NHS Evidence, the new single web-based portal hosted by NICE which provides all health and social care professionals with authoritative clinical and non-clinical evidence and best practice. NHS Evidence provides access to a range of information, including primary research literature, practical implementation tools, guidelines and policy documents. It is improving all the time and is widely used.

My noble friend Lady Brinton asked whether we would think about producing simple guidance for GPs to commission services for specialist conditions. I am happy to feed that suggestion into the NHS Commissioning Board, whose responsibility it will be.

The noble Baroness, Lady Wilkins, asked whether the department might publicise updates on the work plan to the NHS. I shall write to her about that.

I am grateful to my noble friend for the opportunity to discuss these important issues and I thank all noble Lords who have made contributions. We know there is much to do to improve the care of those with neuromuscular and other long-term conditions. At the same time, I am confident that by modernising the National Health Service we will improve the lives of patients with these conditions across the country.